Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 Date: Tue, 31 Oct 2006 14:26:37 -0800 (PST)From: carolina moon <wooleeacre@...>Subject: cathyachalasia Hi mom to Tia I am also a mom of a child with achalasia. My son was diagnosed with Achalasia on his 14th birthday in Dec. of 2004. Between that time and May of 2005 he lost 84 lbs, and through voracious reading and research and this wonderful group we came to be one of Dr. Patti's patients. You also have on of the world famous esophageal specialists right in your own backyard. I would encourage you to speak to him. You would have the opportunity to learn much. At 9 years old she has a long life ahead of her. I would look at all the options very carefully. I am sure he would speak directly with you. Most of the "BIG" guys do. Achalasia is so rare in children. Additionally, has your daughter been screened for scleroderma? or any allergies or etc? A Specialist like Pelligrini along wit hthe Pediatric specialists have a staff that not only can talk to you, but they help with insurance, information, and any other question or problem you may have. Below are some links you may want to glance at and also Dr. Pelligrini's info sheet. and his email!!! If we hadnt found Dr. Patti at UCSF we would have been going to Seattle.. Your childrens hospital specializes in Esophageal Atresia, and Severe Gerd so they are well aware of the "growth factors" in children and do surgeries to accomodate that. I found their staff to be very kind and helpful. If there is anything you need, dont hesitate to email... ask.. The road is full of endless reading, researching, asking, seeking and frustration and tears. WE are HERE to help you... Carolyn Holmes mom of Cameron.. in Northern CA http://www.seattlechildrens.org/our_services/clinical_services/gastroenterology/conditions.asp http://www.uwmedicine.org/PatientCare/MedicalSpecialties/SpecialtyCare/UWMEDICALCENTER/Swallow/SpecialtyServices/ http://depts.washington.edu/surgery/faculty/pellegrini.html http://depts.washington.edu/surgery/faculty/wright.html http://depts.washington.edu/surgery/research/2003/oelsch-pell.pdf Professor and ChairSurgery andUW Center for Videoendoscopic SurgeryUniversity of Washington Clinical Interests: Esophageal surgery, swallowing disorders, pancreatic and hepatobiliary surgery, and minimally invasive surgery. Three Recent Publications: 1997 Pellegrini CA: Impact and evolution of minimally invasive techniques in the treatment of achalasia. Surg Endosc 11(1)97. 1996 McCahill LE, Pellegrini CA, Wiggins, T, Helton WS: A clinical and cost analysis: laparoscopic versus open appendectomy Am J Surg, 171, May, 533-537. 1996 Pellegrini CA: Cardiomyotomy for achalasia in laparoscopic surgery. Operative Laparoscopy and Thoracoscopy, Eds. MacFadyen BV and Ponsky JF, Lipincott-Raven, Philadelphia, 913-925. Click here for Pelligrini's home page E-mail address: pellegri@... <cbourm@...> wrote: Hi,My name is and I found the achalasia site and contacted W. she told me about this group. I live way up North in the Olympic Peninsula. Sequim, Washington northwest of Seattle. My daughter, Tia is right in the middle of testing to confirm if she has achalasia or not. She is only 9 years old. We have had many tests, and dialation of her lower esophagus. Last week, another upper GI showed that barium was getting stuck in her esophagus and there is narrowing again. Her dialation was only 3 weeks ago. She has to have a manometry study to see if she has achalasia or not. From everything I have read she is a classic case, agrees. Our doctor has already said surgery is the next step. The thing that is delaying testing is that the instrument that is needed for the manometry is broke. We were hoping to get the test done this week. Now they are saying it will be another week. I called the doctor today and let him know that to wait another week seems like a lifetime to watch my daughter suffer. She is vomiting almost everytime she eats. She is in 4th grade and weighs only 55 pounds. She quickly runs out of steam because she isn't eating and her mood is very sullen at times. She tells us all the time "why can't they fix me". I know that we don't know if she has achalasia or not. But even if she doesn't, there is not other place to talk to people that are dealing with the same sort of issues. This is so hard. My husband and I feel so helpless and this waiting game is going to make my head explode.Well that is my story, for now. I'm glad I found you all. Thanks for letting me tell my story.Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Joncristino I had my surgery at CC too, in 2002, I’ve had 2 dilations done since both were bougie, as those seem to work best with me. As far as the nissen, yes some have and results with having the fundo taken down or switched to a different type of fundo. Mine is a toupet, though I can’t vomit anymore I haven’t had any other problems with it. My last operation was open since the first one was botched by a doc that didn’t know what he was doing. So far I’m very pleased! There are tons of people on this site that are willing to help and give you ideas!! C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of joncristino Sent: Saturday, January 13, 2007 4:12 PM achalasia Subject: Achalasia It is with great pleasure that I have found this group. Considering I have found little pleasure, lately, thanks to Achalasia. To make a long story short....I started with trouble swallowing solids then liquids in May 2002, at the age of 39. After several upper endoscopies, barium swallow and esophageal mynometry testing, I was diagnosed with Achalasia. I had a Laparoscopic Heller myotomy and Nissen fundoplication in October 2002 at the Cleveland Clinic by Dr. Rice ( one night in hospital). I was relieved of symptoms for only 6 months. I have had 3 pneumatic (balloon) dilations since my surgery (the last one in 2005). I always know it is time for another dilation because I lose my appetite (often feeling nauseated just thinking of eating) and drop 5-10 pounds. Actually, I am going through one of those phases, now! I was at the Cleve. Clinic just last week-had another endoscopy, myometry testing and barium swallow. " Guess what! " , I was told. " You still have Achalasia! " It was kind of insulting. As if I didn't already know that I will have this condition all my life. Anyway, I am scheduled for a bougie dilation next week (different than a balloon dilation, less risk of perforating my esophagus, I have been told.) My gastroenterologist will be conferring with my surgeon soon. Have any of you had great success having a second myotomy, or fundoplication " taken down " , or even an esophagectomy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Hello. What is your name and where are you from? I had a Heller's redo and the wrap was taken down and not replaced. I am so much better and I am glad I had the second surgery. in Georgia. co-founder www.achalasia.usjoncristino <joncristino@...> wrote: It is with great pleasure that I have found this group. Considering Ihave found little pleasure, lately, thanks to Achalasia. To make a long story short....I started with trouble swallowing solidsthen liquids in May 2002, at the age of 39. After several upperendoscopies, barium swallow and esophageal mynometry testing, I wasdiagnosed with Achalasia. I had a Laparoscopic Heller myotomy andNissen fundoplication in October 2002 at the Cleveland Clinic by Dr. Rice ( one night in hospital). I was relieved of symptoms foronly 6 months. I have had 3 pneumatic (balloon) dilations since mysurgery (the last one in 2005). I always know it is time for anotherdilation because I lose my appetite (often feeling nauseated justthinking of eating) and drop 5-10 pounds. Actually, I am goingthrough one of those phases, now! I was at the Cleve. Clinic justlast week-had another endoscopy, myometry testing and barium swallow."Guess what!", I was told. "You still have Achalasia!" It was kindof insulting. As if I didn't already know that I will have thiscondition all my life. Anyway, I am scheduled for a bougie dilationnext week (different than a balloon dilation, less risk of perforatingmy esophagus, I have been told.) My gastroenterologist will beconferring with my surgeon soon. Have any of you had great successhaving a second myotomy, or fundoplication "taken down", or even anesophagectomy? <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" "> Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Hello, . My name is Jon. I live in a southwest suburb of Cleveland, Ohio, named Strongsville. So, a Heller redo w/o a wrap made you so much better! Thanks for sharing. Do you have alot of reflux without the stomach wrap? Was your first Heller laparoscopic? Also, did they have to do an open procedure for your second myotomy? Thanks, Jon. > It is with great pleasure that I have found this group. Considering I > have found little pleasure, lately, thanks to Achalasia. > To make a long story short....I started with trouble swallowing solids > then liquids in May 2002, at the age of 39. After several upper > endoscopies, barium swallow and esophageal mynometry testing, I was > diagnosed with Achalasia. I had a Laparoscopic Heller myotomy and > Nissen fundoplication in October 2002 at the Cleveland Clinic by Dr. > Rice ( one night in hospital). I was relieved of symptoms for > only 6 months. I have had 3 pneumatic (balloon) dilations since my > surgery (the last one in 2005). I always know it is time for another > dilation because I lose my appetite (often feeling nauseated just > thinking of eating) and drop 5-10 pounds. Actually, I am going > through one of those phases, now! I was at the Cleve. Clinic just > last week-had another endoscopy, myometry testing and barium swallow. > " Guess what! " , I was told. " You still have Achalasia! " It was kind > of insulting. As if I didn't already know that I will have this > condition all my life. Anyway, I am scheduled for a bougie dilation > next week (different than a balloon dilation, less risk of perforating > my esophagus, I have been told.) My gastroenterologist will be > conferring with my surgeon soon. Have any of you had great success > having a second myotomy, or fundoplication " taken down " , or even an > esophagectomy? > > > > > > > <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > > > --------------------------------- > Never miss an email again! > Toolbar alerts you the instant new Mail arrives. Check it out. > Quote Link to comment Share on other sites More sharing options...
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